The Blog

The Diving Bell and the Butterfly

How appropriate that, after writing this post last week, my latest Netflix movie turned out to be The Diving Bell and the Butterfly about French journalist and former editor-in-chief of Elle magazine, Jean-Dominique Bauby. Talk about a man who “had it all”, only to seemingly “lose everything” when a massive stroke left him paralyzed from head-to-to with locked-in syndrome at the age of 42. And yet, reflecting on the luxurious life he lead before his stroke, he says,

Today my life feels like a string of near misses. Women I was unable to love, opportunities I failed to seize, moments of happiness I let drift away. A race whose result I knew before hand, but failed to pick the winner. Had I been blind and deaf, or did the harsh light of disaster make me find my true nature?

With only the ability to blink his left eye, Bauby dictated, letter by letter, his memoir to a transcriber who repeatedly recited a French language frequency-ordered alphabet. The movie is an adaptation of this memoir. Here is the trailer:

I have often heard people defend their desire to die rather than live in any kind of helpless, “vegetative” state by saying that they want to spare their family members to bear the burden of taking care of them and watching them suffer. So I loved it when, in the movie, Bauby expressed his desire for death to his speech therapist and she rebuked him saying:

There are people who love you, to whom you matter. I hardly know you, but you matter to me already. You’re alive. Don’t say you want to die. It’s disrespectful. Obscene.

Now, that’s how you respond to someone who thinks his/her life is worthless! Besides the triumph of the human spirit, The Diving Bell and the Butterfly beautifully shows humanity’s warmth and compassion as well. Bauby really was blessed with people who cared for him and valued his life. As a result of their love and generosity Bauby himself came around, choosing instead to focus on what he still had that made everyday life bearable – namely his imagination and his memory…and his children. The other scene in the movie I most enjoyed was when Bauby was out on the beach with his children on Father’s Day, about which he said:

Even a sketch, a shadow, a fragment of a dad is still a dad.

I was particularly struck by this statement because of the recent heartbreaking story of Abbie Dorn, the mother who became severely brain damaged after giving birth to triplets and the debate over whether or not she had any rights to see her children – or her children had a right to see her. Read it, if you dare, but I warn you: it will rip your heart out.

At one point, Bauby laments the fact that his children have to see him in such a humiliating, helpless condition, but then admits:

But I rejoice to see them live, move, laugh. That’s what I call a fine day.

And his children, I might add, are quite happy to have their dad around – whatever condition he’s in.

The quotes here are all from the movie, but I am now very interested in reading the actual memoir to see how closely the movie really depicted the thoughts and words of “Jean-Do” Bauby.

Thanks. I understand the difference, but doctors have been known to diagnose a person as “vegetative” when he or she is actually “locked-in” (see: http://abcnews.go.com/Health/print?id=2835149), so I remain skeptical about most PVS diagnoses. Brain scans can only tell so much and doctors are not mind readers. Besides, it really doesn’t make much difference to the point I was addressing. Hope or no hope, whether one is self-aware and just “locked in” or has no cognitive brain function does not change the fact that each is a human being who should be loved and cared for, not killed.